God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.

(2 Corinthians 1:3b-4, NLT)

Saturday, January 29, 2011

It's amazing to me to look back at this blog and everything we've been through in the last 2+ years... reading my post from September 11 makes me cry, so I don't even want to go back and read the posts from the beginning, and the times when Faith was the sickest... Instead, let's focus on the positive, the happy news, everything that's good, and how far we've come :)

Faith turned 2 in November. We had a small party this year, nothing major, and I actually was late getting to it because I was at a birth (working as a doula). Thankfully, Dave and a couple of very good friends were able to get everything done while I was working, and it all went smoothly. I don't honestly remember much of the party, because the birth I was at had been over 24 hours, and I was totally exhausted... but we were surrounded by family and good friends, all of us thankful for the new milestone Faith was reaching. And, she didn't throw up her birthday cake this year :)

In December, a number of friends and loved ones donated to help us get to Boston for Faith's scheduled check-up, and her surgery to remove her g-tube. On December 10, 2010, for the first time in her life (except for a couple of minutes right when she was born), Faith became 100% tube-free! She did remarkably well with the surgery- originally they had said we'd be admitted and staying overnight, but she was barely in post-op recovery when Dr. Puder told us he thought she'd be able to go home. We stayed an extra day in Boston just in case, and then made the LONG drive home. Yes, we drove from Colorado to Boston. In December. Yes, we are insane. No, we will probably not be driving that trip again, at least not in December... On the bright side, it cost us about half as much to drive as it would have to fly...

Faith recovered well from her surgery, and happily showed off her tube-free belly when we got home to CO. It was cute, if anyone asked her where her button was (that's what we called it), she'd lift her shirt and say, "Gone!" And then she'd say something about how buttons are for babies... She's gotten quite a bit more vocal. Before her CAIR appointment in Boston, we were able to go out to lunch with some short-gut friends, and one of them asked how long it had been since we'd used her tube, and Faith responded that she eats with her MOUTH! Pretty amazing for a little girl who just barely a year ago would gag and throw up if she had any real food in her mouth...

She also started walking sometime this past fall. I can't remember exactly when it was, and with her being the second child and all, I'm sure we didn't write it down... She stood on her own for the first time over Labor Day Weekend, so I know it was after that, but before Halloween, because she walked for this cute picture of her in her costume...

Faith as Madeline!

It wasn't too long before Halloween though, because she was pretty unstable still...

Anytime she falls, she acts like it was on purpose and starts paying attention to whatever is on the ground, like she was just trying to sit down and look at something...

Other big news we learned in October- Faith will be a big sister in July! Other than lingering morning sickness, this pregnancy has gone very smoothly and I am very healthy. We heard a strong, healthy heartbeat at our 12-week midwife's appointment, and I've felt the new baby wiggling around in there a bit. I'm in my second trimester now, and thankful to be having such a peaceful, non-stressful experience with our wonderful midwife again, like we had for the first 2 trimesters of my pregnancy with Faith.

We are planning another homebirth, and I am confident that everything will go as planned this time. I've heard that a lot of women who've had babies with gastroschisis or other birth defects or complications are considered "high-risk" in subsequent pregnancies, and I'm so thankful that we are able to skip the high-risk route. We will be having an ultrasound in a few weeks, just to be sure everything is good, but everything feels completely different this time, so I'm sure it will be fine. With my pregnancy with Faith, something just felt "off" the whole time... I never had the confidence that I have this time around that I'd actually have a homebirth, I just knew deep down that something wasn't right. And, in retrospect, we're able to say that I wasn't high-risk last time, Faith was. Sure, at the time we were afraid I had a serious medical condition, but now we know that my symptoms were diet-related, and since I changed my diet and the symptoms are gone, I'm not high-risk.

Faith and Noah are both excited to have a new sibling, although I don't think Faith really understands... she loves babies though, and anytime she sees my belly, she yells, "Hi Baby!" One of her favorite games is lifting my shirt to see my belly, saying "Hi baby", "I love you baby", and then pulling my shirt down again and saying "Bye baby". She talks right into my belly button, just like Noah used to talk to her :)

Another big update, and one that is very recent, is that Dave has finally gotten a permanent, full-time job! You may remember back in February of 2009, while Faith was still in the NICU, that he lost the job he had then as a DUI probation officer. Then in the end of May 2009, shortly after we returned home from Boston, he left for his basic and advanced training for the Army National Guard... he got home from that last February (2010), and was able to work a seasonal job with a friend's landscaping business over the summer, but we were really struggling with trusting God to carry us through the extended unemployment... Thankfully this past Thursday, he was hired to a full-time position with the National Guard! This will be a great step forward for our family, as well as a huge weight lifted from our shoulders. One of the benefits of this job is that we will have the active duty army insurance, which will actually pay for our travel to Boston for check-ups! Most likely, they'll pay for it as reimbursement after the fact, since the one time we had them pay for it up front, they flew us on United and it was a NIGHTMARE (remember that?). That's not an experience I'm looking to repeat... especially considering the next time we go for a checkup, I'll have a newborn as well...

Other than that, there's not too much to update about. I guess that's why I don't update often- Faith's healthy, growing very well, doing regular 2 year old things, and there's just not that much exciting to say... Hopefully the next update will be in a couple of months to announce that she's potty trained- that would definitely be nice!

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Welcome to Faith's Place!

This is Faith's Place. Faith is a gorgeous little girl who had a long recovery from being born with a serious birth defect called gastroschisis (she had a hole in her abdominal wall and her intestines were on the outside at birth). Her intestines suffered some damage, most likely from being exposed to the amniotic fluid before she was born, and didn't work like they should; she was diagnosed with functional short bowel syndrome at about 4 months old.

Faith was born November 13, 2008, and spent her first 127 days in the NICU at Denver Children's Hospital. Because her intestines were not functioning, she was not able to receive nutrition in the normal way through her stomach and intestines, so she was on IV nutrition (TPN and Intralipids) during this time.

As a result of being on TPN for such a long time, she suffered liver damage to the extent that her doctors in Denver believed she should be evaluated and listed for a small bowel transplant. However, with a survival rate of only 50% at 5 years post-transplant, we weren't ready to take that step. Instead, we did considerable research on our own, and found out about an experimental treatment for babies with TPN-associated liver disease (TPNALD) called Omegaven, which was run by Children's Hospital Boston.

On March 24, 2009, Faith was admitted to Children's Hospital Boston, and became Omegaven baby #115. After only 30 days on Omegaven, Faith's direct bilirubin level (an indicator of liver health) had already dropped from 6.7 to 2.0, including an expected spike to 8.0 about 2 weeks after starting Omegaven treatment. Less than 6 months after starting Omegaven, she was fed 100% through her stomach (enterally), getting large amounts periodically during the day (bolus) and continuous feeds over night, and her liver function test results were *perfect*.

Her central line (a permanent IV line in her leg through which she received her TPN) was removed on September 16, 2009, after almost exactly 10 months to the day of having a central line, without ever having a line infection!

She learned to eat and drink by mouth, and by 18 months old, she was 100% orally fed! Her g-tube was removed in December of 2010, making her officially tube-free for the first time in her life. She is now enjoying life as a "normal" preschooler, with very little medical follow-up, and other than her scars, no outward signs of any of her journey to this point.

If you are new to Faith's blog, click on "2008" in the archive list, scroll to the bottom of the page, and work your way up to read her story from the beginning!

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Statistics to consider...

-The survival rate of children with direct bilirubin levels greater than 3.0 for 3+ months is only 22%. (Faith's direct bilirubin levels were greater than 3.0 for about 4 months.)-The survival rate of children on TPN for longer than 1 year is only 10%.-The survival rate of children who receive a small bowel transplant at 5 years post-transplant is only 50%.-The survival rate of children, with a history of TPN-associated liver disease and direct bilirubin levels of at least 2.0, on TPN, with Omegaven replacing Intralipids, is 98%!!!!!!

Education is the key to saving the lives of children with TPN-associated liver disease. The sooner these children receive Omegaven, the better their chances are of a "full" recovery (any damage that is done stays done, Omegaven does not reverse scarring in the liver).Healthcare professionals who know about Omegaven and neglect to tell their patients it is an option, in my opinion, are failing to uphold their responsibility to do whatever it takes for their patients' health and well-being.If your child is suffering from TPN-associated liver disease and you have found out about Omegaven and its benefits on your own, and your doctors are giving you the run-around when you bring it up to them, it's time to change doctors!! (believe me, I've been there) Omegaven WORKS, as long as it is not started too late!